Triple Negative Stage IV
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Hey Kaay...welcome back from vacation. Pictures please
, we all want to see! You mentioned that our ONC had some possible trials for you....do you know which ones? I am also not PDL1 positive so Kaytruda is not an option. But I know there are others. We will try Halavan next....that is if I have progression. My scan is set for the end of the month.Rosieo...I have not experienced numbness in my face...but do keep us posted on your condition, sending prayers your way!
Steph...how did the chili on an 80 degree day turn out??
Hyde...so happy for your NED! Keep on dancing!!
We leave Saturday for Florida. My daughter (first marriage), step-daughter and son (our marriage) are all getting together. My daughter has two children ages 11 and 7 and step-daughter has 4 children ranging from 18 to 2 years.....none of those cousins have never met each other. Looking forward to that!!
I will post pictures when we return.
Today is a chemo day for me......
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kaay Thanks for the support.
texas I am so glad you are going on vacation. My family is supposed to to Brigantine Aug 11 but if I don't feel any better than this I am going to cancel. Maybe if I get the MRI and it is good I will try to get myself together to go.
Rosieo
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I'm new to this board. I'm pretty new to this stage IV and I'm a wreck. Last year I had a "simple case" of BC. I didn't even tell anyone. Lumpectomy-CMF chemo-radiation... I knew it was TN but knew it was only a problem if it recurred. Less than a year, it's back with mets to my lungs. I have a large tumor on my breast (same spot as last time) and it's spreading.
I feel like the onc has no hope for me. I'm taking just Adriamycin. I'm taking it every week.. I've had it 3 times and the tumor is growing. I'm so naeseous which is why I'm so miserable and so negative.
tomorrow I go back to the onc
(Sorry I'm so negative on this board where you all seem to have your cancer under control
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I'm also new to this board and stage iv. I'm completely overwhelmed and anxious to start treatment (Thursday!) its a long story,but it's taken over two months to get to this point and I am way past ready.
Onc got me in this trial: https://clinicaltrials.gov/ct2/show/NCT02425891?te... nap-paclitaxel + atezolizumab or nab-paclitaxel + placebo. I had taxol as part of the dose dense ac-t. Does anyone have experience on how the nab-paclitaxel compares? Anyone here try atezolizumab yet?
Sorry to meet you Donna if you know what I mean! I had adriamycin as part of the treatment for my primary tumors, it's a real bear! My nausea was terrible the first cycle, but it got better over time as the pharmacist helped me to fine tune the support drugs and my routine. All I remember now was to nail down how much food and when is the right amount and be proactive with the Ativan. Fingers crossed you'll find something that works for you.
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thank you kaayborg! I will ask about this at my next appt. @ Mayo in two weeks!!!
I am glad to hear you enjoyed your vacation, I hope the kiddos did too! My fingers are crossed for your high platelet count tomorrow. I am in tomorrow myself at 9:40 best of luck...I will be thinking of you until the benodryl kicks in and then I think I won't even know my name!
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Donna,
I did adriamyacin, taxotere & cytoxin at same time once every 3 weeks; got very tired, but the steroids & Emmend kept me from getting sick like nauseousness or vomitting. This was 7 years ago. Chemo is not working well for me lately, but they did not give me Emmend.
Terri
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Sherri, glad you found us but wish you had not need of course. That is a great trial getting some game changing results for tnbc. It is what the trial at my center is patterned after...same drug combo. Abraxane is the chemo and I've no idea how it compares to Taxol but I believe my onc said they work quite differently. Texas, I am not sure exactly what trials at Vanderbilt my onc was thinking of but she mentioned that several were opening. I will post some vacay pics but as of yet, I've not gotten all that together. I've got a dinosaur phone so it's not super quick and easy. Still use a regular old digital camera!
Steph, I'll be thinking of you tomorrow! We're going to be doped up on Benedryl at the exact same time, more or less given reality and time zones.
Donna, we have each been where you are and we'll be there again. It is so worrisome when you're searching for what works but you'll find it. Please keep posting and let us know how you appt. goes. It gets easier, not easy, but easier and you are in the hardest part...of what I've experienced thus far anyway. Take care of yourself above all.
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hi all:
I see two new names - welcome, but like everyone e else, sorry its under these circumstances.
I do agree with whoever who wrote people seemed to have their cancer under control. I fel like I'm running around screaming on the inside!
I've been on a break to flush out for this clinical trial and I'm certain the mass in my neck has enlarged: sore jaw, visible facial neck and temple swelling, helped with hot compresses and Tylenol. Lots of coughing and breathlessness.
my prior small brain metastasis was treated once with a cyberknife - hi dose radiation -think like a laser. very easy and effective.
with this extra fluid its like an hour long ice cream headache. I'm hoping this subsides if I respond to this drug.I will settle down once some type of treatment is underway.
Again its so great to read about N ED.. tho what a bummer to struggle with all those extra issues. I hope they will subside too. I am so much also enjoying reading about others' clinical trials. thanks for posting everyone. Tomorrow I find out whether .I am still a candidate for the clinical trial - they will review the results from the 3 ct scans and all the blood work and tell me. Needless to say, here I am online after midnight instead of sleeping!
hope all of you can enjoy some peace of mind this week. I will be thinking of everyone.
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I do take emend. Last year (my original bc) and my first time on it, and this time on it this time it worked somewhat but not amazing. Then my pharmacist pointed out that I was also taking tegretol for seizures (caused by my MS - Multiple sclerosis - I thought having one chroic illness protected me from getting anything else
) and that's why the emend wasn't working so well. So I stopped the tegreol (I didn't really need it anymore - I hope) and after the second chemo I wasn't nauseous at all!! But the third time (My chemo is once a week), I've felt nauseous all week. The "emend magic" only worked once?? I'm supposed to go for chemo again tomorrow. I'm not over last week's yet.Did any of you ever have chemo treatments weekly?
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Update: I had chemo today but platelets were discouraging. Only 80 after a three week break and only half the carbo cycle. No way I'll pass next Tues but they still want to try for it. If not we'll try for treatments on days 1 and 15 instead of 8. I doubt that's gonna pan out either. I also need to slow the infusion even more as I had another allergic reaction, though I caught the symptoms earlier and it was much easier to control. Feeling in limbo but do agree that we must just keep trying it and see what happens.
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Awwww Kaayborg I am so sorry. As if having cancer isn't bad enough...allergic reactions and low white counts. Does this mean you are closer to moving to the immunotherapy? I am new to this stage 4 thing but are you taking any vitamins, probiotics, or drinking fresh juices? I am sorry if these questions are insensitive I am just reading a book by a geologist who developed breast cancer and she went on a search to find the cause vs. the cure. Any way she suggests some immune system boosters. Again sorry I am new and I am sure you have researched everything. I take vitamin A, B, C, D, calcium, selenium, daily probiotic, melatonin to sleep, oh and a daily allergy pill for my extreme sun sensitivity. I am a natural redhead with very pale skin so the sun and I are not friends! My white count has been going up I don't know if the vitamins have anything to do with it or not but maybe worth a shot. I hope things get better for you soon!
Josie1 - did you make the trial?
Donnadd- I do chemo every week, taxol. I think you may need a second opinion or personality. My first onc, said my prognosis was not good and that I would die from this. My second onc said
She isn't afraid of having difficult conversations but that she didn't see a need until the time comes, she was very encouraging about the world of reasearch going on right now for TNBC. I felt more hopeful leaving her office that the first onc i met with.
Sherriew- welcome I am sorry you are here. However, so far this thread has gotten me through the initial emotions associated with this diagnosis, Texas Rose and Kaayborg especially! I am glad for all the new comers and everyone who posts regularly. I log in several times a day everyday and get very bummed out when there is nothing new to read. I hope this thread is as beneficial to your sanity as it has been for mine!
In general I am a hot mess. I try and stay as positive as possible because I feel like it would be really easy to stay in the dark. But I have three small children and I refuse to die everyday. I am not dying today so I need to live and be the very best I can be. I have had days that I could barely take a shower and just walked out wrapped myself in a towel and laid down in my closet and cried. I think I really worry my husband on those days. I cling to this one board for hope everyday. But everyday we are posting is another day we are living so thank you for eveeyone who posts you are my light.
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Thanks, Steph. It's platelets, not whites that give me trouble. Well, technically whites do too but they are controlled by Neupogen and Neulasta. Tis a shame there is nothing to do for platelets. I don't take supplements but rely on a healthy diet. It has been explained to me that while there are foods that help platelets, it really only works if a nutrient deficiency is the cause of the low platelets. Chemo is the cause here so it is breaks from chemo that help them recover. Seems to hold true. I am hoping that despite having to take unstudied breaks from carbo it will continue to be effective for me. If not, we will likely move on to immunotherapy so while it does hint that we're getting closer to that, until scans show progression, we'll keep on keeping on with carbo.
How old are your kids? If you've said before, I've forgotten and do apologize.
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Kaayborg- It amazes me what we can't do anything about. I have never been told this so many times as since my diagnosis.
I have a 6 year old daughter, 4 year old son, and a 2 year old son. So prior to being diagnosed I have been pregnant or nursing for the past 7 years. I had to stop nursing my then 21 month old due to this diagnosis. They really keep me busy! You have three also, right?
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started chemo today, abraxane + atezolizumab or a placebo. No reactions and was happy to find out no support drugs so that's something.
Overall. I'm feeling pretty positive, finally starting treatment instead of all the waiting around! I didn't have enough tissue for the trial so had to re-biopsy my poor liver and the timing of that meant I had to re-do every test and every scan.
Also haven't had to tell anyone I'm stage iv for almost a week. There for a while every social interaction was either me not mentioning this huge thing or me dropping the bomb and then having to absorb their reaction. Im not doing all that great with my own emotions,but dealing with everyone else's was exhausting. Surprisingly starting chemo feels more "real" than most of the last few weeks
Plus an an awful cleaning fluid taste during the atezolizumab or placebo infusion, so maybe it's the trial drug?
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Sherriw-I am glad you are getting started. For me, once I started my emotions were much more stable as I adapted to my new normal. I wish you the very best! I hope the bad taste doesn't last!
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Steph, all those pregnancies and breastfeeding are supposed to help prevent breast cancer. I don't know too many people who breast-feed past a year but I did, not that it helped much in the BC arena. There just isn't any sense in this. Who knows why we have cancer? I have 3 daughters, 12, 10 and 7. They are at the ages now where I'm finding I have a bit more time on my hands. So much more independent. I don't know how you manage. You are a wonder woman!
Sherri, so glad you are getting treatment now and all seems to be going well. I am looking forward to hearing about your great results. Do you know when your scans will be? I assume in 2-3 months. Interesting about the cleaning fluid. I hope it's not lasting past the infusion time. Perhaps there's something to eat or suck on that might help but I can't think of what goes well with cleaning fluid. It is nice to get past the telling people period. I told every person I knew pretty much right away to get it over with but then we moved (locally) and I've met quite a few new people since then who don't know anything. Not sure when or how to bring it up. Never seemed right to mention when we've just met. Eventually hair loss will out me to the neighbors and families of my kids new friends at school but hopefully not for a while.
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Thanks Steph and Kaayborg for the kind words.
The taste was just during the infusion, Kind of like that taste when they flush the port. It lasted the whole hour then was gone almost immediately. Scans are every 8 weeks, so soon
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hi everyone:
sherri, I think if there's a funny taste its not likely a placebo, but who really knows.? so glad something has started.
I was reading a thread "sh*t people say to mbc " and lauging and relating - I think thats why its so hard to tell people as you can't anticipate their reactions and end up needing to support people while you are still learning how to talk about it.. ive had some friendships become incredibly deeper.
I agree about relying on a healhy diet for health but I have concentrated on making sure my salads smoothies and juices bring a greater variety of fruits and vegetables and just extra volume as I sometimes can't eat enough due to fatigue or heat. One woman on a thread specifically added papaya and pumpkin (not what she ate frequently) to stay on her same chemo schedule as her platelets got low and was reporting it worked for her. (I take notes on bits like that and wonder what the future holds!)
I was able to start the trial. Daily trips to the hospital for ekgs and bloodwork. one dose 1st week, 5 doses next week. . will be busy and scanned every 8 weeks. Also started pain medication as I had so many days in a row with little sleep due to horrible facial and neck swelling. 1 day now and such a relief!
hope everyone has a good weekend, J
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I went to my onc. I asked her if she's really giving me the most she can (I'm taking Adriamycin weekly). I asked her if I was her sister, what else would she do? - (I'm being treated in a good hospital) - She said the staff of doctors meet all the time and they feel the Adriamycin is the way for me to go. Well, I've done my 4th treatment and nothing is getting smaller - maybe even getting more - I'll go back to her after the 5th treatment.
What if the Adriamycin doesn't work? They think Taxol would have disastrous effects on my nervous system because of my MS. She said I wasn't a good match for any of the trials out there. I think my main issue is that the cancer returned so fast after treating it the first time. Maybe it never really disappeared the first time. But it's still growing. I see it in my breast and any time I cough I really worry what's doing in my lungs.
The Emend worked wonderfully for me this time (too bad...The oncologist was prescribing medical cannabis for my nausea if I needed it
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Donna, my cancer also returned very quickly (within a year, though clearly it was busy at work in my liver for a good while before I had symptoms making me wonder too if it hadn't been there all along). I am wondering why your onc said you were not a good match for the trials. When are your next scans? If Adriamycin does prove ineffective there are several other chemos to try other than Taxol. Hang in there. You are asking good questions of your doctor. Keep advocating for yourself.
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Thanks Kaayborg. I'm a little confused about all these trials. So many trials and no cure? Why risk getting a placebo, or trying out a "useless" drug, at a time when you NEED the real thing? People have gone though all the possible known drugs already? Where can I find all the options for drugs and all the trials?
I'm doing another PET-CT in another month and a half.
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Donna, I'm pasting some links below which someone sent me, though I have not tried to look this way much myself. I feel my doctor is on it and has already been searching for the best trials for me so I haven't looked on my own. As for your concern re: getting a placebo, we all of course wish to be in the test group but being in the placebo group does not mean you get nothing. You will still get a treatment that is understood to be effective. The one I am looking to do is with abraxane (a chemo) and an immunotherapy. I'd either get abraxane alone or in combination with the immuno drug. There is a chance do a study at OSU where all get the trial drug, so of course this is what I most want.
"Kaayborg. May your carbo go well. I've been reading about immunotherapy and it seems like you are a candidate for immunotherapy. Here is one list of clinical trials. And here is another. May Carboplatin be easy and work for a long time, but Immunotherapy is something to start researching. Immunotherapy has been accepted as promising for breast cancer, particularly TN HER+ and heavily treated cancers."
I don't have a list of chemos good for TN but from reading on these boards I've come across several different ones. Xeloda, Abraxane, Gemzar, Carboplatin, Taxol, CMF. There are likely more and certain ones work better for different types of mets. They also work in different ways so just because you don't respond to one doesn't mean the others are junk. (Pretty sure AC/T didn't do a thing for me since I had a liver full of mets just 7 months post tx). For me, my onc also mentioned Afinitor a targeted therapy standard for hormone positive but one that is proving to work with TN in some trials. My tumor tests showed it might work for me and so my onc thought we could petition the insurance companies to cover it as standard care or perhaps get it as a trial drug down the line. So, point being there should be several options for you. I'd ask your onc what he/she thinks you should try next and next. I've told my onc that it gives me peace of mind to be one or two steps ahead so she's willing to guess the future plan of action the best she can.
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Actually, here is a pretty nicely explained list for you.
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thanks kaayborg. I really find it overwhelming. I don't see me reading all the medical explanations and understanding them and then telling my onc which drug I think I need. The most I can do is keep reminding her to make me her #1 priority. Last appointment she asked if I want to come back in 2 or 3 weeks (my chemo is weekly) . I told her 2. I need her constantly checking the tumor and answering questions. I like your idea of asking her what's next if this isn't working.
How long till they decide if the chemo is working? I've had 4 treatments and I think it's obvious that nothing is shrinking unless it needs more time. So meanwhile I'm afraid that it's growing in my lungs (that's where my mets are) or even some new place. The first time, my lump was small so I started with a lumpectomy which removed everything. After that there was no way to know if the chemo was helping anything.
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You are like me. My tumor was 1.4 cm. Lumpectomy took care of it all, clear margins, no node involvement. Because of my age (37), I went ahead and had a bilateral mastectomy, too. Wanted no regrets. Turned out to be unnecessary as it was in my liver though unknown to us at the time, of course.
Scans are usually done every 8-12 weeks and they will tell if it's working. If scans are stable, it's working. If shrinking, all the better. I don't have any palpable cancer to gauge how I'm doing so I can only go on symptoms and scans. I like my scans closer to the 8 weeks than the 12. Scans can always be done sooner so ask if you need to. I was in a panic once about progression based on how I felt and my doctor did early scans for me even though she was not concerned. Scans were good and I got peace of mind and have found myself I bit more patient since (but not that patient).
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Barb -bless your heart I'm sure you are scared. I'm not a Stage IV patient but I have a friend who is now. I'm sure ladies on the Stage IV forum can offer some sage advice. I think doctors are careful to use the word contained instead of cure because frankly BC isn't curable IMO. I have Stage 1a IDC Grade 1 and 5 years out but I never think of being cured of BC. It's managed.
Good luck and keep the faith. There are a lot of long term Stage IV survivors out there.
Diane
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Good news! I actually got chemo today and had no allergic reaction! That means I had a full treatment cycle for the first time in probably 3 months I'm guessing! Platelets were technically too low for treatment (require 75, I was 68), so I need to get blood work next week to make sure they don't get hit too hard. My infusion also took 4 hours with 16 steps! My total visit was from 8:15 - 3:45. Ugghhh on that for the new norm but I can't complain. It worked! I'm feeling well and hanging on to my first line of treatment, nearing a year and hopefully well beyond!
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kaayborg got chemo kaayborg got chemo...happy dance happy dance!!!! I am sorry it took so long but glad you got a full dose! Bout Time Lady!!!! Very happy for you!
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Thanks Steph! Here are your long-awaited vacay photos, Texas and all. Of course I had to go and look dumb in the full family shot so you get two.
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Hi there ladies,
I was wondering if any of you are Triple Neg Stage IV Metaplastic Metastatic?
Need a chat pls.
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